Cystic fibrosis causes a sticky mucus to build up in the lungs, clogging them and leading to life-threatening infections. It also clogs the pancreas so the body can't properly digest food. (Associated Press)

Shauna Moore of Sydney Mines has a nephew with CF. The little boy's sister, Kerrington, also had the disease but she passed away two years ago at the age of nine.

Moore said the girl wasn't tested until she was three and a half years old. He brother was two years old when he was tested.

"The difference between my nephew and [my niece] was amazing. The damage that was done to Kerrington at three and a half was irreversible and I feel, that if we had to have the testing when she was a baby, I wouldn't be having this conversation," said Moore.

Bob Fortier, president of the Cape Breton branch, said testing is not expensive and not difficult. He said early testing means early treatment, and much less time spent in hospital.

"They gotta do two or three different tests — the sweat test, which is a few dollars. The minister of health here in Nova Scotia has already indicated that the cost is negligible, it's not an issue. The longer they wait, the worse it is for the next kid that's diagnosed with CF," he said.

Fortier is urging the provincial government to quickly make a decision to test babies here.

"I think it's just political will. I mean it's mind-boggling when you know that you have a child with CF here. If he was born in Ontario, it would be detected at birth, yet in Nova Scotia it isn't," he said.

About 30,000 Americans, and 70,000 people worldwide, are living with cystic fibrosis, caused by inheriting a flawed CF gene from each parent, according to the Cystic Fibrosis Foundation. An estimated one in every 3,600 children born in Canada has CF.

The disease causes a sticky mucus to build up in the lungs, clogging them and leading to life-threatening infections. It also clogs the pancreas so the body can't properly digest food.